I was first diagnosed with TN in November of 2014. I started taking Tegretol and have worked up to 1200 mg per day. I have complications with a recent tooth extraction which has confused the doctors and myself. My latest oral surgeon is of the opinion that the extreme jaw pain I'm experiencing 2 or 3 times a week is really caused by a trigeminal nerve irritation from the extraction and subsequent oral surgery where a piece of bone was extracted from the socket. I have tried phoning and emailing my doctor and his nurse to ask how to take the Tegretol - 3 in morning and 3 at bedtime or spaced throughout the day? - with no answer. The neurosurgeon is so busy that I had to wait 3 hours the first time and 4 hours the second time to see him. An MRI found nothing for him to correct surgically so he wants me to find another doctor nearer my home since he is understaffed. If somebody here doesn't answer, I'll just keep taking 3 in the morning and 3 at night. By the way, when they upped the dose to 1600 mg, I almost immediately started seeing double. It went away when I went back to 1200 mg per day. I can report that taking Tegretol has reduced the pain inside my mouth and totally eliminated earaches and face pain. However, I stopped chewing when this all started, so I'm not sure if it will come back when I start really chewing again. I just mull things around in my mouth until they are soft. I really miss pizza and salad, but can do without anything else that needs chewed. But eventually I'll have to test chewing. Right now I'm having a really terrible time with this jaw pain and the attacks. It hurts all the time, but only at a 2 or 3 level. But every few days, there is an unbelievably painful attack which usually lasts for 7 or 8 hours. I'm seeing a new Neurosurgeon in 2 weeks for a second opinion. I know most of you out there in the TN community are taking Tegretol or something similar so maybe you can tell me how often in the day you take it.
Try calling your pharmaists to contact your doctor about the instructions. When I took it, I was instructed to take it 3x a day. But I firmly believe a doctor should write out the script as that is the professional.
I switched from the regular tablets to slow release and find I have much better pain coverage. I take my am dose and then the pm dose 12 hours later.
I like Patty, have done better with slow release…I take mine 3x a day , it’s what works best for me. I’m on 1400 mg, was on 1600 mg but that’s the highest I’m allowed to take before my blood levels change. So I try to stay at 1400 mg.
I take:
2 200mg pills at 8:30am
2 200mg pills at 12:30pm
3 200mg pills at 6:30
In addition to Dilantin & Clonazepam
It takes time to find what works best for you, trial and error but always discuss with your doctor. If you’re not already on slow release perhaps ask your doctor about switching.
(( hugs )) Mimi
Thanks to you all for your replies. Unfortunately my insurance will not pay for the slow release type of Tegretol. It's already $17 per month for me and I'm a senior on a fixed income with financial problems. The cost of the slow release for me would be $81 per month. I did try upping the dose to 1600 mg per day, but started seeing double, so had to go back to 1200. I have now started taking 2 in the morning and spacing out the next 6 throughout the day. Thanks again. Sandy